Peter Staley Talks AIDS, Activism, and How to Get Your Point Across
by Lester Strong
Photographed Exclusively for A&U by Sean Black
For anyone involved with or concerned about AIDS activism these days, Peter Staley should be a household name. Not only was he involved in ACT UP (AIDS Coalition to Unleash Power) almost from its beginnings in the 1980s, but he’s prominently on view in David France’s award-winning, Academy Award-nominated 2012 documentary How to Survive a Plague.
The world for those living with HIV/AIDS today is very different than it was in the early years of the epidemic. The disease is no longer considered just a “gay plague.” It has spread globally. There are now effective medicines to halt its ravages on the immune system, and there is a large research effort underway to discover new medicines, including vaccines aimed at halting its spread to new populations or curing those already infected.
The prognosis for the disease even today is not problem-free. Among the current issues: How can the bad side effects of the AIDS meds be countered? How can we ensure that everyone living with HIV/AIDS receives the medications they need? How can we set up effective educational campaigns aimed at stopping the spread of the disease? Nevertheless, we are in a different place, largely because of the pioneering efforts by ACT UP, and in a recent interview, Peter Staley provided valuable insights into some of the effective strategies used by that organization to reach its goals.
[pull_quote_right]One day going to work, he was handed an ACT UP flier, and decided to attend the next meeting.[/pull_quote_right]First diagnosed with AIDS-Related Complex (ARC) in 1985, Staley’s life was understandably turned upside down. A bond trader on Wall Street by day, he lived a closeted gay life in a period when openly gay men were not exactly welcome in the straight-laced corporate world. One day going to work, he was handed an ACT UP flier, and decided to attend the next meeting. Soon he was trading bonds by day and chairing ACT UP’s fundraising efforts in his free time. The illness forced him to come out to his family—whom he found very supportive—and eventually at work. In 1988, he left bond trading to go on disability leave, and became a full-time AIDS activist.
Staley participated in some of the ground-breaking ACT UP demonstrations, among them: closing down the offices of the U.S. Food and Drug Administration (FDA) in Rockville, Maryland (1988); blocking traffic on Wall Street in New York (1988); protesting inside the New York Stock Exchange (1989); invading the Burroughs Wellcome offices in Research Triangle, North Carolina (1989); storming the Fifth International AIDS Conference in Montreal, Quebec, Canada (1989; at the time, a members-only event open just to doctors and HIV/AIDS researchers); draping the home of racist, homophobic, anti-AIDS-funding North Carolina U.S. Senator Jesse Helms in Arlington, Virginia, with in a large nylon replica of a condom carrying the printed message “A condom to stop unsafe politics—Helms is deadlier than a virus” (1991).
Less visible to the media, but extremely important in terms of AIDS activism, Staley was a founder of ACT UP’s Treatment Action Guerrillas, later known as the Treatment Action Group, or TAG. It focused exclusively on the pursuit of AIDS treatment solutions, and was willing to negotiate with groups ACT UP targeted for demonstrations like government health agencies and pharmaceutical companies. After some rancorous arguments between TAG members and others in ACT UP who distrusted what has been called “insider activism,” there was a split in the larger organization, and TAG went its own way.
In 1991, Staley was appointed to the board of amfAR (the Foundation for AIDS Research), where he served until resigning in 2004. In 1999 he founded aidsmeds.com, still a functioning website dedicated to helping educate those living with AIDS about the disease and the medicines available so they can make informed decisions about their treatment. And in 2004 Staley, a former crystal meth addict himself, funded and launched an ad campaign of printed posters on phone booths in the heavily gay Chelsea area of Manhattan aimed at gay and bisexual men warning about the dangers of using the drug.
[pull_quote_left]Whenever there’s a great injustice and people aren’t paying attention, whenever politicians aren’t doing their job to address the problem, it’s the role of any vibrant civil society to actively speak out.[/pull_quote_left]Clearly in terms of activism, and especially AIDS activism, this is a person who knows what he’s talking about. During the interview, held in Staley’s Brooklyn apartment, and asked what part he thinks activism plays in our society, he answered, “In our country historically it’s been a big driver of change. Whenever there’s a great injustice and people aren’t paying attention, whenever politicians aren’t doing their job to address the problem, it’s the role of any vibrant civil society to actively speak out. People live in their own worlds and sometimes need to be shaken out of their complacency. They need to be pushed out of their comfort zones.”
Turning specifically to AIDS activism, he continued: “We had a viral epidemic that was allowed to take hold and start spreading rapidly because of who the virus was initially targeting. America back then was a very homophobic country. Americans didn’t want to think about homosexuality, let alone discuss it. Then homosexual men started dying in ever-increasing numbers. The problem for those of us concerned about AIDS was how to tell the story in a way that nobody could ignore. We didn’t have to convince them to be comfortable with homosexuality. We just had to make them uncomfortable with what the country was doing, which was letting hundreds, then thousands, then many, many thousands of its own citizens die because of neglect.
“We had to tap into a very American trait. As a society we have a great capacity to not look and not see. But when we’re finally brought face to face with a problem or injustice, we start to make something happen. Think of civil rights and the TV coverage it began to receive in the late 1950s. America couldn’t turn away from those images, and that’s when things started to change.”
According to Staley, ACT UP drew from earlier activist movements in America: civil rights, women’s liberation, pro-choice, and of course gay liberation. “We were probably on the radical end of that activism, because of the time constraints we felt we were under,” he said. “We all felt we had very, very little time to save our own lives and those of our friends. We had to push that much harder.”
Staley pinpoints the October 1988 demonstration by activists that closed down the FDA headquarters as the start of a real national awareness about AIDS. “It was the first time Americans saw homosexuals on TV in mass numbers. They were angry, they were determined, they were demanding to be heard, they were taking care of their own. They had this beautiful story of heroism in the face of neglect, with the media there in full force reporting on it all. And Americans began to feel ashamed of the situation they were being forced to confront.”
Staley bluntly labels the ACT UP tactics “guilt-tripping” the American public and their political representatives into responding to the AIDS crisis in a responsible, caring way. A more charitable description might be that ACT UP was able to rouse the conscience of the American people. But there was more to it than using loud demonstrations or invading buildings and closing down offices as the means of garnering media attention. As AIDS started to take its large toll of sick and dying individuals, it forced many, many, many men who had kept the gay part of their lives secret from their families and work colleagues into coming out, as already mentioned in regard to Staley. And like Staley, they often found the support they were seeking, which enlarged the number of people actively interested in seeing action on the part of the government and medical establishment. There was also invaluable support from the lesbian community, many of whom joined ACT UP and/or were part of the primary support network for their gay male friends who were sick from the disease. It didn’t take long. “The NIH [National Institutes of Health] budget started to soar almost immediately,” Staley commented.
As mentioned earlier, ACT UP, effective as it was in steering the national debate over AIDS in a good direction, ran into internal problems. Asked to comment on that aspect of the movement, Staley said, “Pretty much all social movements begin to have infighting within a few years. We had a good five years before the major splintering happened in ACT UP. I was part of what you might call the ‘drugs-into-body’ treatment activists. We called ourselves the Treatment and Data Committee, and wanted to combine street activism with an inside game where we negotiated with those in the medical establishment we were seeking to influence. Others disagreed. The Treatment and Data Committee later became the Treatment Action Guerrillas, and eventually the Treatment Action Group, or TAG, which in the early 1990s split off from ACT UP.
“On looking back, I do think, underlying everything, what really fed the split was immaturity. We were young, and there were a lot of strong emotions driving everyone. There were many people, like me, who had no prior movement experience. We just couldn’t handle our differences. I regret the split. I think there’s a chance it could have been avoided.”
Asked how he thought it could have been avoided, Staley said, “There are some pretty common-sense practices to help an organization deal with these problems. TAG itself experienced infighting eventually. We brought in a paid facilitator and did some full staff/board weekend retreats where we talked through all our issues. If all goes well—and some of our retreats went really, really well—you can get another six months to a year of productivity with everybody on the same page and excited about the work before any infighting starts again and you need another retreat. It’s a standard conflict resolution technique used by corporations and not-for-profits. Social activist movements don’t use it, but there’s no reason they can’t.
“In ACT UP, we finally reached a point where whole groups weren’t talking to each other, just anonymously bad-mouthing those they disagreed with. We were so angry. We had so many committees—if only we’d had a Movement Committee whose sole job was to self-reflect on how the organization was doing from a mental health perspective! If you can’t afford a paid facilitator, that’s what I’d advise other activist organizations to do.”
The split within ACT UP might have been avoided, but of course it wasn’t. By the early 1990s, as Staley noted, TAG was on its own. “The split allowed TAG to continue playing the inside game as strong as ever,” said Staley during the interview. “We took off like a rocket, and hit the ground running. We were intimately involved in pushing the government and pharmas to all get on the same page, and I think the results showed when 1996 rolled around and protease inhibitors were introduced.”
With effective medicines on the market to halt the ravages of AIDS, and Staley taking them, 1996 also marked a watershed for him personally. “After I realized I wasn’t going to die right away and had a future life ahead of me, I had to decide what to do next career-wise. It took a long time. I had always dreamed of doing something entrepreneurial, but that had gotten pushed aside by AIDS activism. I worked with a good career counselor, who helped me realize that to enjoy my work I had to feel like I was making a difference in the world. The Internet was fairly new, and there were a couple of websites with information about AIDS on them. But I thought they had weaknesses.
“That’s how aidsmeds.com came about. I decided to focus on the very complex issues of AIDS treatments, and boil them all down for people living with or newly infected by HIV in a way that wouldn’t be intimidating. People with access to computers could self-educate themselves about treatment alternatives and become self-empowered. They could go into their doctors’ offices and be partners in deciding how to treat their health issues instead of just feeling like a cog in the medical machine or enslaved by HIV and what the virus was doing to them. I know I always found it very empowering to know how the virus did what it did and what my treatment options were. Anyway, the website took off and became very popular.”
These days Staley’s AIDS activism has veered toward new developments in the AIDS prevention sector. “I’ve become a big PrEP [pre-exposure prophylaxis] advocate,” he said. “Rarely has the science of AIDS been this definitive. With PrEP, we have a drug that has low or no toxicity for HIV-negative people. Taken as prescribed every day by the uninfected, it’s been shown in clinical trials to have a stunning success rate in preventing HIV infection, at least among men—between ninety-nine percent and 100 percent in some of the trials I’ve read about.
[pull_quote_right]I myself consider proponents of PrEP the new AIDS activists, and I consider them heroes.[/pull_quote_right]“If PrEP had come out in the 1980s, there’d have been no debate. We’d have been burning down government buildings to get it released. Today, those advocating PrEP have been disparaged as ‘Truvada whores’ [Truvada is currently the only drug approved for PrEP] by some opposing its use, as though despite its proven efficacy it’s not a morally acceptable prevention method. I myself consider proponents of PrEP the new AIDS activists, and I consider them heroes. However, from my perspective as a gay man living with AIDS, I think even the criticisms are valuable because they show that gay men are talking about this epidemic again in a way they haven’t been for many years now. We need that discussion.”
As a long-term activist and survivor of the disease, Peter Staley’s views even in today’s changed world of AIDS count for a lot. And his final words on the subject during this interview? “It’s a period of optimism,” he said. “In it’s own way incredibly exciting. I think we’re going to be around when they find a cure.”
Well, they’ve found a cure for hepatitis C. A cure for AIDS? Exciting indeed.
A&U would like to thank the Lesbian, Gay, Bisexual and Transgender Community Center in New York City for generously allowing us to conduct this photo shoot on its premises.
Lester Strong is Special Projects Editor of A&U.